The EBMT requests from all member centres that all patients undergoing an HCT, treatment for aplastic anaemia, or any type of cellular therapy be registered in the EBMT Registry. The EBMT Registry Data Collection Forms aid the collection of all the data that is required to be submitted to the EBMT Registry.
Centres are responsible for ensuring that patients and donors consent to their data being transferred to the EBMT, prior to collecting data for submission to the EBMT. Informed consent templates and further instructions on obtaining informed consent can be found on the Informed Consent page.
Latest Patient Registry Data Collection Forms
In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These Data Collection Forms are the latest version of the core and extended dataset. The core dataset is the minimum essential data that must be provided by all EBMT Member centres for their consenting patients. Extended dataset is additional information that can be provided by centres to store more details on a patient's medical history.
| Document Name | DCF | Completion Guideline | Version |
|---|---|---|---|
| Patient Registration | /node/5668 | /node/5636 | 2.0 |
| Document Name | DCF core | DCF core + extended | Completion Guideline | Version |
|---|---|---|---|---|
| Disease Status at HCT/CT/GT/IST | https://www.ebmt.org/ebmt/documents/diseasestatushctctgtistday0v22-core-only | /node/5652 | /node/5639 | 2.2 |
| Allogeneic HCT | https://www.ebmt.org/ebmt/documents/allohctday0v22-core-only | /node/5644 | /node/5615 | 2.2 |
| Autologous HCT | https://www.ebmt.org/ebmt/documents/autohctday0v22-core-only | /node/5646 | /node/5617 | 2.2 |
| Cellular Therapy | /node/5650 | /node/5619 | 2.1 | |
| Immunosuppressive Treatment (IST) | https://www.ebmt.org/ebmt/documents/istday0v21-core-only | /node/5659 | /node/5628 | 2.1 |
| Gene Therapy | /node/5654 | /node/5623 | 1.1 | |
| Treatment non HCT/CT/GT/IST | https://www.ebmt.org/ebmt/documents/treatment-non-hctctgtist-v12-core-only | /node/5671 | /node/5640 | 1.2 |
| Document Name | Timepoint | DCF core | DCF core + extended | Completion Guideline | Version |
|---|---|---|---|---|---|
| HCT (both Autologous & Allogeneic) | Day 100 | https://www.ebmt.org/ebmt/documents/hctfud100v22-core-only | /node/5657 | //node/5626 | 2.3 |
| HCT (both Autologous & Allogeneic) | Annual/Unscheduled | https://www.ebmt.org/ebmt/documents/hctfuannualv22-core-only | /node/5656 | /node/5625 | 2.3 |
| Cellular Therapy | Day 100, 6 months & Annual/Unscheduled | https://www.ebmt.org/ebmt/documents/ctfuv22-core-only | https://www.ebmt.org/ebmt/documents/ctfuv22 | /node/5621 | 2.2 |
| Immunosuppressive Treatment (IST) | Day 100 | https://www.ebmt.org/ebmt/documents/istfud100v21-core-only | /node/5661 | /node/5630 | 2.1 |
| Immunosuppressive Treatment (IST) | Annual/Unscheduled | https://www.ebmt.org/ebmt/documents/istfuannualv21-core-only | /node/5660 | /node/5629 | 2.1 |
| Gene Therapy | Day 100, 6 months & Annual/Unscheduled | https://www.ebmt.org/ebmt/documents/gtfuv12-core-only | /node/5654 | /node/5623 | 1.2 |
| Document Name | DCF | Completion Guideline | Version |
|---|---|---|---|
| Anonymous Event | /node/5645 | /node/5672 | 2.0 |
Donor Outcome Registry Data Collection Forms
| Document Name | DCF | Completion Guideline |
|---|---|---|
| Donor Registration | /node/5058 | /node/5062 |
| Donation Procedure and Day 30 Follow-up | /node/5059 | /node/5061 |
| Long-term Follow-up or Death Reporting | /node/5057 | /node/5060 |
Manuals and Reference Documents
| Document | Download |
|---|---|
| EBMT Registry User Manual for Data Editors and Data Viewers | /node/5117 |
| Introduction to the EBMT Registry Completion Guidelines | /node/5645 |
| List of Chemotherapy Drugs, Agents and Regimens | /node/5645 |
| List of disease classifications | /node/5645 |
| MicroStrategy User Manual - End users | /node/5611 |
| HLA data entry manual | /node/5839/ |
| EBMT Data Collection Forms Updates summary | /node/5948 |
| OMOP Export from the EBMT Registry | /node/5925/ |
Patient Registry Data Collection Forms - Archived v1.0
In order to collect data, the EBMT uses a set of Data Collection Forms (DCFs). These Data Collection Forms are referred to as the version 1.0 of core dataset, now out of use. This is the minimum essential data that must be provided by all EBMT Member centres for their consenting patients.
The forms are organised in the corresponding event types in the EBMT Registry. Completion guidelines are available for every Data Collection Form. An introduction document to the completion guidelines can be found here
| Document Name | DCF | Completion Guideline |
|---|---|---|
| Patient Registration | /node/5033 | /node/5034 |
| Document Name | DCF | Completion Guideline |
|---|---|---|
| Acute Leukaemias | /node/5063 | /node/5067 |
| Autoimmune Disorders | /node/5064 | /node/5068 |
| Bone Marrow Failure Syndromes (BMF) inc. Aplastic Anaemia (AA) | /node/5065 | /node/5069 |
| Chronic Leukaemias | /node/5066 | /node/5070 |
| Combined Myelodysplastic Syndrome / Myeloproliferative Neoplasm (MDS/MPN) | /node/5084 | /node/5075 |
| Haemoglobinopathies | /node/5080 | /node/5071 |
| Inborn Errors | /node/5081 | /node/5072 |
| Lymphomas | /node/5082 | /node/5073 |
| Myelodysplastic Syndromes (MDS) | /node/5083 | /node/5074 |
| Myeloproliferative Neoplasms (MPN) | /node/5085 | /node/5076 |
| Other Indication Diagnosis | /node/5086 | /node/5077 |
| Other Non-indication Diagnosis | /node/5329 | /node/5330 |
| Plasma Cell Disorders (PCD) inc. Multiple Myeloma (MM) | /node/5087 | /node/5078 |
| Solid Tumours | /node/5088 | /node/5079 |
| Document Name | DCF | Completion Guideline |
|---|---|---|
| Disease Status at HCT/CT/IST | /node/5038 | /node/5043 |
| Allogeneic HCT | /node/5035 | /node/5039 |
| Autologous HCT | /node/5036 | /node/5040 |
| Cellular Therapy | /node/5037/ | /node/5041/ |
| Immunosuppressive Treatment (IST) | /node/5044 | /node/5042 |
| Document Name | Timepoint | DCF | Completion Guideline |
|---|---|---|---|
| HCT (both Autologous & Allogeneic) | Day 100 | /node/5093 | /node/5048 |
| HCT (both Autologous & Allogeneic) | Annual/Unscheduled | /node/5051 | /node/5047 |
| Cellular Therapy | Day 100, 6 months & Annual/Unscheduled | /node/5045/ | /node/5046 |
| Immunosuppressive Treatment (IST) | Day 100 | /node/5054 | /node/5050 |
| Immunosuppressive Treatment (IST) | Annual/Unscheduled | /node/5053 | /node/5049 |
| Document Name | DCF | Completion Guideline |
|---|---|---|
| Anonymous Event | /node/5055 | /node/5056 |